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Just a quick hello from Jothebrit

Just wanted to introduce myself. Joined this board a couple of days ago.
I'm 37, female, grew up in Manchester, Britain and Heilbronn, Germany, moved to S.C. (boy was that a bad choice, when your sun-sensitive)18 years ago. Three beautiful sons (14, 12,9). Married for 17 years.
Got diagnosed with lupus in September '05 ( sounds like my dx was pretty quick, compared to most of you) definite on the skin, iffy and we're not sure on the systemic.
Hubby being very supportive (except I think he's looking at me like I'm going around the bend at the moment). My Mum lives in Germany and is freaking out ( her best friend is a medical know-it-all with dire predictions)
Rest of my family and husbands family is clueless. Two best friends are great, they took me out to buy some funky hats last week, since my hair is thinning rapidly. My kids don't know what to think, Mom's on a roller coaster and don't know what to expect one day from another.
I have worked as a substitute teacher for past 5 years, this month my gross income was $25.(at least that pays for one doctors visit). Very active in Boy Scouts (half my life feels like, but hey what else could I do with three boys)
Symptoms so far: started with rash on arms, face and chest, that got really nasty, extreme fatigue ( which equals to filthy house), sleep all the time, pain in knees and ankles, weight loss, weight gain, hair loss, swollen ankles, total irrational moods, lots of fog on brain, stomach pain and ulcers in mouth and throat. (I think that's enough for now)

Filthy house? If you can't get the hubby and the boys to chip in and help (I'm suggesting WHAT?! :shock: :shock Consider one of two things...ignoring it or hiring someone to do the really hard parts. If people come over, realize they've come to see YOU, not the house. Just get used to a level of mess, it is OK, there are no "messy police" out there. Or, hire someone. I hired someone to clean the bathroom and kitchen - just that - twice a month. (Of course, I don't have boys to consider in the equation). That made all the difference. It didn't cost that much either - I went with a private person, not one of those "Merry Maid" things.

Go for it with the hats! They can be a joy once you start getting used to them. I feel naked without mine now.

Send your Mum some of the research on lupus.org - and tell her to stop listening to her friend.

And hugs - I've enjoyed your posts and am so glad you're on board with us!

Truly, I am SO lucky to have (LOTS of) help. Between the physical therapy (twice a week), the acupuncture (twice a week), the dentist for tmj (once a week), my internest for the diabetes and my rheumatologist I don't have time for much of anything else!

hmmmm does she scrub your kitchen sink too? I swear to you my mil and her mother got a TOOTHBRUSH and scrubbed every inch of my sink DURING my son's bday party last year. BTW it wasn't even dirty, it wasn't spotless but I promise it had nothing growing out of it. Some people just can't help themselves I guess. ME? I am certainly not one of them. I tell anyone coming to my house, if you are coming to see me then come on over. If you are coming to check out my house, don't bother cause it's a mess. You have to lighten up on yourself and realize things have changed. You also have 3 boys and a dh that are (as far as I know) more than capable of picking up the slack. My 7 yo cleans toilets like a pro (course he also has fun doing it??? LOL), helps load the dishwasher, helps with the laundry AND can make his own meals if need be. As in cereal for breakfast, sandwiches or even soups in the microwave. There aren't many days he has to do that but he can and will. {{HUG}} I hope you feel better AND get some help soon.

Thanks

Thank you for all the messages, finally feel like someone understands what i'm going through.
I just read the spoon theory and loved it, and decided then and there, today no more spoons are going to be used on cleaning.
Did something incredibly stupid yesterday. I was subbing for the P.E. Teacher and had the 4thgraders outside jumping rope, when my dwindling brain convicts me to show off how well I can jump rope. Well I was just happily jumping away when my ankles buckled, scared the kids half to death. Well boy am I paying for it today, ankles are totally swollen and hurting like crazy. I need a big sign on my forehead DON"T TRY THIS WITH LUPUS! Anyway hubby did bring subs home for supper last night so that was worth something.
Thank you again for all your support.
Jo